“Nothing could have prepared us for what Trisomy 18 meant for our family better than the Foundation. The website helps guide parents/family through the decisions that they will face from the time of diagnosis until after the birth of their precious child.”

Gina Prayer’s Family

“Everywhere we went, people were always running after us with one of Gina’s socks and saying ‘Excuse me, your baby lost her sock’. She didn’t lose it. She purposely kicked it off!” Gina Prayer had already developed into quite a character! She had the most beautiful smile and would smile quite often especially during Eskimo kisses and when Wendy made miew-miew noises. She also smiled when one of their dogs licked her head! She was taking great interest in her toys, especially those that rattled and the ones with bright colours. She hated being swaddled, hated wearing a hat and, of course, only liked to wear one sock!!

Gina Prayer first started bringing her parents joy 2 months after Scott and Wendy got married, when she was conceived on Wendy’s 35th birthday. When they found out Wendy was pregnant they were so happy they told their friends and family immediately! Wendy writes, “We saw Gina for the 1st time on 30 Sept. She was barely a dot but we were already in love. On 6 November, at about 12 weeks, we saw her for the 2nd time and she was swimming away, never staying still in one place. That’s our Gina, full of life even at that stage! We felt her first kick on 29 November and she kept on kicking even on the day we went in for induction. “

On their very first visit their OB asked whether they had given any thought to amniocentesis. Since they had no intention of terminating the pregnancy they didn’t feel they should risk a miscarriage by doing an amnio. At that time, the worst thing they could think of that could happen was Downs Syndrome and they felt that they could totally love a Downs baby.

All was going well until 6 January 2003. Wendy started spotting slightly over the weekend and went to see the doctor. Her regular OB was away, so the replacement sent them down for a level 2 u/s. That was when Gina was diagnosed with what they thought was a multi-cystic kidney and possibly a small VSD. The doctor in charge recommended an amnio because these 2 conditions are markers for Downs Syndrome. The spotting had nothing to do with any of these conditions and could have been due to the stretching of the uterus which was about 4 weeks larger for term as there was excess amniotic fluid.

They went home and looked up every bit of available information on the internet about multi-cystic kidneys, VSD and excess amniotic fluid. That was when Trisomy 18 started to enter their lives. They agreed to do an amnio a few days later when their OB was back because they felt they needed to find out one way or the other instead of spending the next 4 ? months wondering about it.

During the amnio, they watched Gina still bouncing up and down, dancing away as the needle went in. Afterwards, Wendy’s OB had specifically asked her to take it easy for 2 days instead of running around like she had been. Those two days seemed to be an eternity; the FISH result came back positive for Trisomy 18 on Tuesday, 14 January at midday. “Scott and I held each other and cried for our little girl, for us, and for our dreams of the future. “

“We called our parents that same day and, of course, the question about whether or not we’d continue with the pregnancy came up. Although we had said we were definitely never going to terminate for any reason (partly because of my faith but also because we were already so in love with her), we were starting to feel a little unsure. In the end though, we decided to leave her in God’s hand. Her life was already going to be short and we felt that rather than making it any shorter we should just enjoy all the time we were given with her.”

“We also sent out the following note to everyone including Scott’s bosses and colleagues the next day:

Dear All,

Some of you may have already heard that we have had the amniocentesis test done to check on the health of our baby after finding out that she only has 1 working kidney. Unfortunately, the results did not turn out as we had hoped.

Our little girl has Trisomy 18 which is a defect that affects only 1 in 3,000 to 4,000 babies and there is no known cause. It’s a chromosomal defect. If you wish to know in greater details, please look it up on the net. What it does mean is that she is unlikely to survive. We may be blessed enough to carry her full term, but it’s likely than she would not survive more than a few days. 90% of babies with Trisomy 18 will not make it to their first birthday.

Please don’t feel bad for us. Scott and I feel incredibly privileged to have her in our lives even if only for a very short time. We love her dearly and would never regret a moment of this. While she’s still here, bouncing about inside me (and they say Trisomy 18 babies don’t move very much – you should check out how our little girl just never stays still!), we are determined to make her time inside of me and, hopefully, in this world, the best ever for her. This means we’re not going to sit about and mope.

This also means that we need your help in cheering us up at times because there will be times when we get a little sad (although we’ll try hard not to inflict this on any of you). Our first request is that you don’t greet us with “Sorry to hear”. We’re not sorry and you shouldn’t be either. Be happy for us that we were given the opportunity to experience this love, this joy.

We are ready to carry on. Yes, we’re a little scared about a lot of things right now (e.g: will it happen again? Can we have a healthy child?, etc.) but we are optimistic. Some of you know that, while I’m not exactly a great example of a Christian, I do have my faith in God. He’ll help me through this. Scott also has his faith. And, we have each other and you, our dear friends and family. We are truly blessed.

Please keep little Gina Prayer in your prayers. All we ask now is for her to have the best time of her little life (apparently, one of the markers for Trisomy 18 is my slightly larger-than-term uterus. Thank God for that because it means that our energetic little girl has plenty of room for her dancing routines!!). Please keep us in your prayers too. Thank you for your kind support.

Love,
Scott, Wendy and Gina Prayer”

Their friends and family found the note very helpful. It made them feel comfortable to talk to them about Gina and the pregnancy and meant they didn’t need to tiptoe around them. 8 of their closest friends came to their house the night the note went out. They stayed until quite late just chatting and crying with them. Wendy says, “It was the best thing anyone could have done for us then.”

The rest of the pregnancy was uneventful. Every time they went in to see their OB, they had another ultrasound so they could see Gina, and she was always her active self, always putting on a show! “During those last few months, we didn’t go anywhere because we were so worried that she’d die in utero or arrive early. We also needed the time to just be together and prepare ourselves for what was to come. We had picked out a casket for her, yellow and purple flowers for the funeral, songs and poems, and had agreed to have her cremated. We had also arranged for her to be christened in the hospital as soon as she was born. What we didn’t prepare for was her homecoming, as we just didn’t dare hope for that! We had a few bodysuits and a dress for her. That’s it. No cot, no bottles, no nappies even!”

On May 21, her due date, Gina was still not engaged and didn’t look as if she had any interest in coming out! The OB decided that they should wait a little longer as Gina seemed to be doing well and putting on weight indicating that the placenta was still doing its job. However, by May 29, everyone agreed to induce labour on May 31. “The day arrived and we were all so excited and, at the same time, very scared.” At one point Gina’s heartbeat started to drop and they were faced with the question of whether to have a c-section. They chose to wait a little longer and Gina did fine from then on. After breaking her water about 11:30 p.m., the contractions really started. Wendy had an epidural that didn’t really help and after several hours, at 3:59 a.m., little Miss Gina Prayer came into the world with her gorgeous big blue eyes wide open. She started breathing after a bit of suctioning help and Wendy was no longer in pain.

“Gina was just a little below 4 lbs and she was about 16 inches long. She had black hair then but it later changed to a slightly reddish brown. She started off looking more Asian (despite the big blue eyes) but as she got older, she looked more and more like her Scottish daddy. She had an apnoea spell once about 2 hours after she was born. They gave her a little oxygen and she was fine. She never had another apnoea spell throughout her short little life. The doctors decided to keep her in the NICU and we were the only parents allowed in there at all hours. Thank God for that as we just didn’t know how long we were going to have with her.”

The doctors did many tests on her brain, heart and kidneys. The good news was that her brain was functioning normally and there were no signs of anything being wrong there (other than the mental retardation typical of Trisomy 18 babies). The VSD, which they thought was a small one turned out to be huge 7 mm. Her PDA did not close and she also had 2 very small ASDs. The multi-cystic kidney turned out to be a duplex kidney, which was a bigger problem. “We were asked to think through whether we wanted them to operate on her to fix the heart and the kidney. That was probably the hardest decisions we’ve ever been asked to make. Deciding on carrying to term was much easier by far. We simply left it to God. But this? This was different. If we said go ahead and operate, we’d be putting her through pain. Great pain that even grown-ups find difficult to bear, and Gina was a tiny little baby, our tiny little baby. If we said no, were we robbing her of the chance to have a longer, healthier life? After much discussion and careful consideration (and many prayers, too, on my part), Scott and I agreed that we’d do nothing for the time being. If Gina lived a while, put on a fair bit of weight and grew stronger, we’d reconsider. For the time being, our first task was to get her eating and putting on weight so we could get her home.”

“Gina was fed via a tube in her nose fully for the 1st 3 days. I kept trying to breastfeed her but she didn’t want any of it!! She was given my milk via the tube and then on the 3rd night, she began sucking from the bottle. By the 4th day, the doctors were talking about letting her go home as soon as I was comfortable feeding her via the tube and bathing and changing her. Boy, I worked hard at it and on 7 June, we took our little Gina Prayer home one of the happiest days of our lives. By 10 June, Gina was taking all her milk from the bottle but we kept the tube in for another week just to be sure. We removed the tube for good on 17 June another one of our happiest days! Gina was christened at our home on 11 June because we couldn’t get the priest into the hospital due to SARS!”

“We threw a first-month birthday party for Gina Prayer on July 1. Many of our friends joined us in the celebration. We were all so proud and pleased that she had crossed yet another milestone. That same night Gina Prayer was named Princess Pumpkin by her uncle Arch (one of mummy and daddy’s closest friends). To end the celebration, Gina, mummy and daddy sent a whole bunch of balloons to all the angels in heaven.”

“Gina slept in our bed with us. She went shopping, out for a walk, and even partying with us. Our friends would take turn holding her and she just loved the attention. Gina met her paternal grandparents when she was born. They flew over from the UK and stayed until the night of the christening. She also met both sets of her maternal grandparents (including my step-mum and my step-dad) in Thailand on the 2 trips that we took together when she was 1 ? months old and 2 ? months old. Cameron, Gina’s beautiful 6 year old half-brother, met Gina on the webcam and has photos of her.”

“We were due to move to Bangkok together on 26 Sept. However, God and Gina had other plans. Gina left us very suddenly and peacefully on the evening of 24 September. She drank her milk, threw up, made a little noise, smiled and passed away. Her heart just stopped and our hearts broke. Our lives suddenly became so empty. Instead of flying to Bangkok on the morning of 26 Sept, we were at her funeral and she was cremated. We had lots of poems saved on our computer for the funeral but the computer was already at the port in Bangkok with all our things. We sang Gina’s favourite hymn, Amazing Grace and played Robbie Williams’ Angels which is what we and all our friends now call “Gina’s song”. Gina’s Auntie Nic and Uncle Junior, 2 friends we’ve grown to love and who loved Gina dearly, wrote a speech and a poem which they read out at the service. Gina’s God-daddy also read out his speech and Scott read out a letter which we both wrote to Gina. It was a beautiful service fit for a beautiful princess.”

“Everyone came back to our house that day for the wake. We played Gina’s video. There is one bit of her smiling and making little noises. I’m so glad we made this tape. It is the best thing we’ve ever done (apart from choosing to continue the pregnancy). It keeps me going and cheers me up. We also let loads of yellow and purple (our favourite colours on Gina), and green (just to make up the number!) balloons go to her and her angel friends. I think Gina remembered the balloons that we let go on her 1st month birthday and decided to use them to let us know she’s well. There were 2 balloons left in the house a yellow and a green one. They were sitting on the ceiling together in front of the study. All of a sudden the yellow one started to float across the room (a pretty big room) and went to circle Scott. It sat down on one side of him and then on the other. Everyone had stopped talking and just watched this balloon move to where I was on the other side of the room and sit in my hand. When Uncle Arch (the one who named her Princess Pumpkin) returned from a trip to the supermarket for more drinks, we gave him the green one to let go while we let this special yellow one go. The green one flew straight up but the yellow one went up and came back down to sit in front of Scott and me. Finally I said “It’s okay, honey, you can go and play with your angel friends now”. It then took off.”

“We still send balloons to her and her angel friends on the 1st of every month (her birthday) and on the 24th of every month (angel day). We also light candles for her because we know that she loves lights. Gina has used balloons to let me know she’s ok 5 more times after that. I wish she’d do it more often but I know that she has to concentrate on her new life with God in heaven.”

“Gina was such a happy baby. Very easy going. The only time she was upset was when she was hungry (just like her mummy!). She never had a fever, a cold, diarrhoea, or even a nappy rash. Gina taught us to live in the now. Cherish the moment and when it’s time, learn to let go. We miss her dearly. We wish she could stay but we realise that it was time for her to go back to God. She’s well now. One day we’ll be together again but until then ‘I look above and I know I’ll always be blessed with love.’ (Robbie Williams’ Angels)”

“On the day that she became an angel, while saying goodbye, we noticed that she only had one sock on. We found the other one in the car and I still sleep with it on my pillow every night.”

“6 months on and we are still standing. There are now good days and bad days which is much better than during the 1st few weeks when there were lots of bad moments in a day. The good times are getting longer and the bad less frequent. The pain is still just as deep and intense. Scott & I still cry buckets. We still miss holding her, smelling her sweet baby smell, touching her soft skin, looking into her big blue eyes, Eskimo kissing her, listening to her squeaky noises and just having her around. This is our life now. We just have to learn to make peace with it. The pain will never lessen or go away but we will learn to live with it. “

“This journey has brought us in contact with many wonderful and loving people. We owe our sanity to everyone on this Trisomy18 Support board. Without the kind, encouraging and wise words of all of those on the board, we’d have fallen apart a long time ago. We truly see and feel God’s love through you all. Thank you.”

“Gina Prayer your life may be short but you lived it well and we will now try to live ours well just as you have taught us. We love you and miss you very much.”

Disclaimer: The content of this page does not reflect the views of the Trisomy 18 Foundation. The Trisomy 18 Foundation offers this space to parents as part of the Support Program. Parents have control over how they tell their child's story as well as which pictures they feel comfortable sharing with the Community.